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Monday, July 28, 2014
Newborn and Infant Care
Webbed Toes - Progressing Rapidly AFTER birth
At three weeks our baby`s first and second toes began to fuse. We are thrilled with our pediatrician, and he and we are adamant that they were not like that at birth. He said he had never seen a condition like that that ocurred AFTER birth, and that we needed an expert ASAP. He expected a plastic surgeon would fix it and do biopsies. I have read everything on the congenital defect and we, as well as our ped., the neo-natal expert (he was early) and his entire staff, are convinced this began AFTER three weeks of age and as of today the webbing is thicker than it was THREE DAYS AGO. The ped is very concerned and verified the growth. Our problem: We live in an extremely small town. Our pediatrician and his office has tried to refer us to four different experts who say this is out of their area. The soonest anyone will see us is in three weeks. Our pediatrician is not happy with this and is calling the nearest major city to try to get us in somewhere. I understand that this is not an emergency service. However, we are beside ourselves. Any comments. I know you cannot give expert advice or treatment recomendations. However, if there is no information on this, we are obviously going to try to contact whatever type of expert we should see anywhere in the US. We are scared. If we can`t get a referral in this small town, what type of expert would we look for? Thank you.
I can only imagine your distress and appreciate your sense of urgency in finding an answer. This is a most unusual presentation for syndactyly, webbing between fingers and toes. The good news is that this can be an isolated condition that is passed from generation to generation within a family. Pediatric orthopedic surgeons can do marvelous repairs even with severe problems, which is not the case for your child, thankfully. You and the physicians caring for your son would have noted more extensive deformities of his feet if they were present. If the referral to the orthopedic surgeon is 3 weeks away, this is not such a problem. They often are able to achieve better surgical outcomes with larger children.
A greater priority would be to consult with a geneticist. Syndactyly also occurs in a wide variety of genetic syndromes that also vary greatly in their consequences to the child. These syndromes can only be identified through chromosomal analysis by a qualified geneticist. Geneticists are located at major medical centers throughout Ohio including Rainbow Babies and Childrens Hospital, Columbus and Cincinnati Childrens Hospitals, as well as The Ohio State University Medical Center. It is a positive indicator that you are not describing many more physical differences in addition to the syndactyly. However, it is important to be certain that all is well with the baby and that his toes are the only issue.
As you await an appointment with the geneticist, it would be helpful to speak with all of your extended family members, especially grandparents and great grandparents, to identify any physical differences ever seen among family members that anyone can recall, any pregnancy losses among the women in the family on both sides (Mom and Dad's) and at what point in pregnancy they occurred, any known reasons why stillbirths or miscarriages occurred, and infant deaths and why, and family members with developmental problems or problems progressing in school. These are facts often not spoken of within families and so you may be unaware of them. If you bring a complete family health history to your first appointment, it will help the geneticist in developing the plan for appropriate tests to ensure your son's health.
Meanwhile, it is very important to remember that babies easily sense their parents' distress and fear. It is critical not to let yourselves become overwhelmed with worry such that it causes you to forget your son's very real need for your loving care right now and always as you work through the processes that will answer your questions. You and your pediatrician are doing all that you can to get those answers and much of it is not in your hands. Your son is in your hands and doing well enough physically to be at home with you. This is truly positive.
I do sincerely wish you well in your search for answers, hoping that they are yours soon, and the news is good. I hope this information is helpful.
Mary M Gottesman, PhD, RN, CPNP, FAAN
Professor of Clinical Nursing
College of Nursing
The Ohio State University